Making Waves for PCD | Community organisation

Making Waves for PCD

Phone: +61 439 922 618

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• Charitable organisation
• Community organisation
• Charity organisation

25.01.2022 As part of Mason’s Tune up he has Antibiotics through his line everyday but has Physio to help strengthen his lungs and shift all the mucus so that he can clear his lungs. Glad we don’t have to clean up this mess with all his big bubble blowing. The crew at the Royal children’s are a very special bunch going above and beyond for our babies. we are trying to make people aware of what a tune up is being Masons first was a bit daunting so that parents can get an understanding of what is involved, every case is different this is just our experience we hope it helps others PCD Australia

24.01.2022 Always trying new things to make physio fun. This is 6 minutes of a Nebuliser, 60 to 100 blows of bubbles with 3 huffs and a double cough every 10 bubbles, then... we get to make snow. Thank goodness we have tiles. It’s fun and doesn’t make it feel like such a chore, even though when Mason sees me making his Neb up he’s shaking his head saying noooo lol! Challenges but we keep it to fun. See more

24.01.2022 So today marks another first for our PCD journey, Mason has had to have his first tune up and another bronchial lavage. Taking mason to get put under don’t get any easier. But he is out of surgery and recovering well, now to start the tune up 9 days of intense antibiotics and physio. A massive thank you to the staff at the Royal children’s hospital you girls and guys are amazing.PCD Australia

23.01.2022 PCD Awareness Month Fact #4 #cure #moveforacure #pcdaustraliaoctoberawareness #pcd #lungs #pcdaustralia

23.01.2022 We have a lucky door prize valued at $300 that will be drawn tonight at 9:30pm after the PCD foundation AGM. It’s a fantastic prize.

23.01.2022 This was a very special Moment. No words can describe the generosity of people in our community, there is so much love. The Gol Gol Preschool where both Ava and Mason have been apart of for the last 3 years have truly been amazing in helping out with both PCD Kids. ... The staff have always gone over and beyond. I Thankyou Tara Gathercole and your Team and all the families that are apart of this Preschool you are all such beautiful people and we Thankyou you for your kind donations on Halloween dress up day last week. The Gol Gol pre-school raised a whopping $200.00 for PCD Australia which is just amazing. Once again we Thankyou .

23.01.2022 Congratulations to the last 3 raffle winners listed in the comments of each prize.

23.01.2022 If anyone has any photos from last night can you please send them to me or pop them on here please.

22.01.2022 Thankyou to the Coomealla Memorial Soorting club for there kind Bistro voucher to the Value of $60.00! How amazing are these Prizes.

22.01.2022 So our Trip has come to an end, but we put our party frocks on and headed to The Gol Gol Hotel for our fundraiser night. A massive thank you to all that attended the night it was great to see so many people out to support us and help us celebrate. We felt a little overwhelmed by all the donations that we had received from the amazing businesses. We had some very funny highlights for the night with a bidder in the auction bidding against herself but the kinder of the night and the highlight of Ben Ridley charity auction career was a Bag of fresh boundary bend potatoes going for an almost world record $325.00. We raised a massive amount well above our expectations, that left us gob smacked. We will release the amount very soon and continue to promote our adventure and have some big news to follow.

20.01.2022 For many PCD patients misdiagnoses can lead to lung damage that is irreversible. More awareness amongst doctors and more research is needed. #research #awareness #rare

20.01.2022 Teaching life lesson in the waiting room at the Royal children’s hospital 4hrs and counting won’t be long now....

18.01.2022 Limited research in Australia and no Government funding for PCD patients often results in patients not being able to access certain drugs. Example is an antibiotic that is available to one chronic lung disease on the PBS at a dramatically reduced cost is not available to PCD patients at the same cost. #costs #medications #cost-prohibitive #pcd

15.01.2022 The last day of our adventure has come to an end, with a short trip from bottle bend to mildura then back to Gol Gol, today we where joined again by PCD Australia president Catherine Kruljac for the last stint with mason and his big sister Ava also joining us we packed heaps of snacks and even got a surprise visit from his best friend jetty boy who joined us for the last leg so we headed off around 10 with the Mildura Dockside Cafe in our sights for a little pre celebration s...ip. A big thank you to all of our crew who have made this week a remarkable one. With a funny start to the day road crew benfield getting a flat battery( apparently these things happen when you leave your ignition on overnight) and just making it to the fuel station after a quick top up from the boat jerrycans Bec was on her way to get more fuel. And we where headed mildura way after some photos and the odd selfie with the kids we made it then all was to do was to take the boats out and park them on the lawns of the Gol Gol Hotel and get ready for party. See more

15.01.2022 With Thanks to Midway fruit and Veg Buronga we have a $50.00 mixedfruit and vegetable box. Look how amazing this looks.

14.01.2022 To be able to cope people need to feel like they belong . Not having a support network can cause mental health issues to all involved. #supportnetwork #community # care #50% #raredisease #foundation #researching #research #funding

14.01.2022 Still have a couple of items from the Auction night. Do I have any bidders on the wonderful Cappa Stone Wines pack including an apron.

12.01.2022 Giving back isn’t cancelled. On #GivingTuesdayNow, we’re sharing ways you can express generosity right from your own home. We here at PCD are raising funds for Standards of Care for all PCD patients across Australia so they can all have the same Standards of Care no matter what State or Territory you live in . We need $150,000 to make this happen. Every little bit helps. https://pcdaustralia.org.au/you-can-help.php

11.01.2022 Genetic Testing is being done for PCD but not all patients have had access to this. #genetictesting #awareness

10.01.2022 Ok here we are a beautiful piece of artwork (butterfly) from Steptoe and Daughter.

10.01.2022 Fact 13 # rare disease #correcttreatment #equality #standardsofcare #raredisorders #awareness

10.01.2022 So Masons tune up still continues on over the weekend but with some good behaviour( good progress more than good behaviour) Mason has been granted some day release, still has to have antibiotics via drip in the morning & night as well as his Physio before we do our little trips. The trips are to make his experience as positive as possible so that it leaves a good experience with him about his tune up. Yesterday we visited the Melbourne Zoo and got to ride on a tram, We all ha...d a great time together as a family creating positive memories for Masons first tune up, he was pretty impressed with the free refills of the slushie machine and loved the snakes and lizards (takes after his dad) and today another tram ride to the Queen Victoria Market with his snatch hat coming along for the ride (mason calls this his shauno hat Australian 4WD Action ) for lunch and a quick look before the afternoon spent with family in the Starlight express room playing games no some Father and son time watching a movie snuggled in bed. Making waves for PCD is moving forward in its mission to help promote PCD Australia wide one step at a time and raise much needed funds to help families with their much needed equipment, funds and also helping PCD Australia work towards a Standards of care for PCD patients Australia wide this alone will make a massive difference to everybody suffering PCD. LETS DO THIS!!! See more

09.01.2022 Today marks the first day of our Awarness campaign for PCD Australia. Not many Aussies are battling this rare Disease which makes it very hard to get the proper care they need in each state Buuut there is a small committee behind the seens that want to help these Aussies get the right care they deserve. We need your help! Donate now and help support PCD Australia reach there goals to help families all over the country. How are we going to do this, this year? Well! We have 44 different genes in PCD and our 5 year old Son Mason has one, so he and his sister Ava 7years) are going to ride 44km for the month of October. We would love your generous support to sponsor them to ride for PCD for the month of October.

09.01.2022 So it’s been a while since we have posted, as most people are aware we have been very busy. We are planning the making waves for PCD 2020 adventure but may be running out of water, August 28th 2019 Lake Hume had 43% of its water capacity today it’s down to 22%. At this rate we may be walking down the murray. For those people that are unaware about lake Hume it’s a major part of the murray river storage above Albury and Wodonga. Let’s pray for some rain

06.01.2022 To all our PCD Fans we have had an Extra 3 Donations given to us after the raffle. I’ll post photos in a Moment! Stay tuned! We still have all your tickets so Goodluck!

04.01.2022 To all of the romantics at heart- Happy Valentines day. Did you know that Some People with PCD are born with their heart on the right hand side of their body. This is called situs inversus. Love is something eternal; the aspect may change, but not the essence. Vincent van Gogh, Artist... A friend is one that knows you as you are, understands where you have been, accepts what you have become, and still, gently allows you to grow. Wiliam Shakespeare, Poet #pcd #situsinverse #wrongside #heart #awareness

03.01.2022 You wouldn’t think it would be hard to blow 60 to 100 bubbles a day. But the struggle is real. Some days it’s just such a chore but we will punch this PCD in its face! We will even do bubbles in bed. We try everyday to make it fun and most days we succeed. Please people, Wash your hands, stay safe, be carful out in the public as we have little and big treasures to protect.

01.01.2022 It’s getting colder and colder and Nanny and Ava have been busy whipping up Wheat bags. 100% of the proceeds go to PCD Australia. $10.00 each, if you would like one posted I can get a price on postage for you. Please inbox if you would one or two or three. All different sizes Available. Direct Deposits PCD Australia BSB 633 000, Account 168 595 940 and I can issue you a receipt for tax Purposes.